[MikejanulewiczParticipant]

Hi Dino,
Yep, keeping on top of the vomiting and nausea can take a bit of trial and error.
I had subcutaneous infusion of nozinan which worked real well, but did make me amazingly sleepy (a real bonus) . Don’t be afraid of asking for stronger and stronger anti nauseates as the quicker it settles the better.

It’s great that you are linked to the Internet, St James in Leeds is a fantastic modern purpose built cancer treatment unit, BUT, no wireless signal, and no decent mobile signal !
Nightmare!

I wish I could give you some good advice……all I can say is to remember the reason you’re doing this is to extent your quality life until relapse, hopefully many many years.

Hope you’re getting a few visitors to pass the time of day.
Regards,
Mike

[andrewrParticipant]

Just had my SCT at St. James some rooms can get a decent 4G signal!

Great nursing staff though

 

[davidbrParticipant]

Hi Dino and Andrew

Let us know how you are doing. I am sure I am not the only one interested in your progress. Also my thoughts are very much with you as this discussion has reminded me what you are going through.

Best Wishes David

[dinoParticipant]

Don’t know what happened last couple of days but very little yesterday as I kept being sick. Docs saying to nearly for the Mephalan and are the anti sickness drugs working – does a falling trees make a noise if you are not there?

So the cells went back yesterday and they tasted of tin tomatoes. My wife Tina missed it because the ward signs barred visitors from 1-3pm. Another error on our part as this is a split ward and it was for the other side. Ask the questions!!!!!

Today I have managed to keep the cornflakes down and just eating the apricots for lunch. I have a frog in throat so taking eating carefully. Let’s get through today eating bit by bit. I am 16 stone so some slight weight loss could be accepted.

Please advise if anyone takes offence at the blog as some people may not want to know details – me I had to know as much as possible.

[louishenryParticipant]

<p style=”text-align: left;”>I had my stem cells in yesterday, feeling grotty but not actually sick yet. The nurses are telling me the middle week is the worst.</p>

[MikejanulewiczParticipant]

Hi Dino and Louishenry,

I think you two are going to be in a race to be the first out of hospital !
You’re both now on “day 1” ie first day after stem cells going back in.
I was hugging the toilet very hard at this point, I always react to high dose chemicals, I remember that high dose Pernod was particularly bad.
Dino I think your doing really well to be even eating cornflakes and apricots.
The visiting times are usually totally relaxed and even if there is a policy, it never seemed to be enforced.

Keep going guys and keep in mind the good times ahead of you.

Mike

[melaniesnParticipant]

Great news that you are now on the countdown to going home! Wishing you well. Are you allowed vistiors throughout the Stem cell as mum is under the impression that she has to be in total isolation.

Thanks,

Melanie

[andrewrParticipant]

I was allowed visitors every day as long as they had a plastic apron and gloves

[melaniesnParticipant]

Thanks Andrew, that would make her feel much better. I think that is one of the things she was worried about as I would expect a visit helps keep your chin up through the hard times. How far through the process are you? I do hope you are feeling ok now. Thanks again

[andrewrParticipant]

I’m about 6 weeks post second SCT. I’m recovering well and putting weight back on again after losing two stones. Already I have most of my energy back and plan to start picking up my normal voluntary work again very shortly.

The SCT process was rough and visitors and text and facebook support from friends  and family was very important at putting a smile on your face when you’ve nothing else to smile about.

 

[dinoParticipant]

I have to corroborate what Andrewr stated that reading support on here mean’s I am not the only one going through this.

Melanie asked the docs what the score is, we are each different in the disease, treatment and body make up, they are best placed.

Managed soup and roll yesterday and also today along with chicken and jacket spud. Trying get the fibre in before the expected motions that have been mentioned. Still being slightly sick, more reaching than sickness. Not a nice felling.

As my original cells are still working I went out of Addenbrookes for fresh air today. Shorts, T-shirt and flip flops and spent 30 mins on the phone. Not sure if it boostedme or not. Came back to the ward and others had visitors. Bit of a downer as living 40 miles away makes visiting difficult especially as grand child has throat infection and other daughter not feeling well. My wife cannot see to drive at night therefore even Sunday could be a short visit. My brother in law work is here so he popped in and I do have the phone. Being institutionalized makes it worse, that lack of control.

Still good point is Louis and myself are now in a race to see who leaves hospital first. As none of you know us we are both out siders, book is now open, takers?????

My little bit of light heartedness in a bit of a weird and bum week.

Please keep the comments coming in for all of us in hospital as it does make a big difference.

[davidbrParticipant]

Dino

Hope all is going well have you got a sore throat yet?

You surprise me saying you have been outside. I spent 18 days on the ward. They did move me around to 3 different rooms as midway I was infectious. But I was not allowed out of my room apart from that and couldn’t even see the sky.

I was only allowed well adult visitors and they had to wear hats, aprons, gloves and shoe covers.

When I finally escaped it was very strange outside in the fresh air. They had to give me training to walk up and down stairs.

Regards David

[davidainsdaleParticipant]

Hi Dino

Good morning from Merseyside. Sounds like you are doing really well. The best advice is to do what you are told by the medics. They have seen it all before and are there to look after you.

I had my SCT just over 18 months ago and am doing really well now. Just back back from a few days in Galway,Ireland and the Wild Atlantic Coast. When I was in hospital I tried to set some realistic goals of what I wanted to do when I recovered. At the time a spot of gardening or a drink in the pub would have been fine.

I found the lack of sleep caused by staff coming in every few hours to carry out their checks the worst part and was glad to get home to my own bed. One consolation was that I had a view of the River Mersey and could watch ships going in and out of the port – funny what you remember!

Hope this helps

David

[louishenryParticipant]

Not much to report from Southampton at the moment, 3 days after I got my stem cells back. Feeling a bit grotty but not actually throwing up. Eating a bit. I’m not allowed out of the room at all but my wife visits most days, otherwise I just enjoy watching the building site and car park all day!

[dinoParticipant]

Louis, been a bit of a sleepy 2 days along with bile and foam coming up. Food is not great made worse by not tasting anything correctly. I am still allowed out as NY cells have not reached neutropenic and allowed a window open. Everything is according to plan. Trying lucozade a tiny bits or marsbars tonight. Feeling tired and now getting light headed when I get up. Cannot have any no 2 motionsand trying not to get a heavy laxative in case I get the check runs.

Tina came in today and she accompanied me in the shower whilst I washed – and no she stayed in the dry area.

Nearly 10pm and coming up to my first week at 8pm tomorrow.

[Author]

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